Help with Autism/Issues

[steph_momof3]

I am a newbie, both to this site and the world of autism. My two year old son was diagnosed in early December. So far, we have no services (ST, OT or DT) lined up (we are on waiting lists). I am the type of person who NEEDS to do something. However, I have read so much my head is spinning and I don't know where to go next. :

I am very open to different ideas, suggestions, input, etc.

His story:

He and his fraternal twin brother were 8 weeks preemie, born 12/16/04. Both were in the NICU for a month or so before coming home. Both had reflux, DJ's was quite severe. He has also had lots of bouts of diaper rash, vomitting, etc. He outgrew a rather severe gag reflex (thankfully) and no longer vomits at almost every meal.

All that said, he seems to be very high functioning. He doesn't speak, nor does his brother. My husband has 8 nieces and nephews, none of whom spoke a word before 2.5 years old. He is the most affectionate kid I have ever seen. He craves touch, hugs, kisses, etc. He does some hand flapping, some rocking and has just started putting his hands over his hears when something is overwhelming to him.

He sleeps horribly; always has. We do give him melatonin each night which seemed to work wonders at first, now we are back to where we started from. He is improving on his own with eye contact and responding to his name. He was also diagnosed with having a severe developmental delay, but I do see some of that resolving on it's own.

Like I said, any helpful hints for the sleep issues would be great. He can also be VERY stubborn and resists changes/transitions.

THANKS!

Steph

[sbgrace]

Hi Steph! Welcome--I think you will love this board! I also have twin boys and one of mine has an autism dx. as well. Like your son he has struggled with some digestive things (reflux, gagging, vomitting all very familiar here). My son is also a contact craver--I love his hugs--I think I've had about 30 today already. That is likely a sensory clue as well as a wonderful trait!

First, give yourself some time to sink into the diagnosis. Even if you saw it coming it is still an adjustment. It is also hard for some (was for me). How are you doing?

Take a breath. You don't have to do anything right now.

When you are ready, I'd focus on what you want to do to address the autism if you plan to use any autism related therapy. There are parents using almost every therapy (as well as those who aren't pro-therapy) on this board so lots of resources and opinions. http://www.autismweb.com/education.htm This site has a great over-view of each of the major autism specific treatments. Floor time and RDI are done by parents. I'm not familiar with the others enough though I know some are typically done by people outside the family. Also, I would pick a few things to help with his gut/tummy issues and digestion--whatever is manageable for you both emotionally and financially. You can decide more later.
I'll tell you what I am doing realizing that every kiddo and family situation is different.
First, I am addressing the weak areas related to autism with a parent based therapy called Relationship Development Intervention or RDI. It is listed in that site above with the other therapies and I think it gives this link but http://www.rdiconnect.com/ I like it and it has already helped my son. Prior to this I did floor time (though self taught with books and such) and found it beneficial too.
Then I do some biomedical things to help him be healthy and feel better. My world in this area has been complicated. If I could rewind to your place I would start more simply. I would think about addressing some of his digestive issues with a good probiotic and digestive enzymes if he can tolerate them (Houston's Brand is great and the owner will talk with you directly at no cost and even send free samples to try). Start the enzymes very slowly. These are easy things to start. Later if you are up for it you might try to cut out all dairy and all gluten and see if there is improvement. There are lots of diets out there..I've tried most of them.
As far as supplements, I give my sons carlson's cod liver oil--good for both boys and you too actually! I do particular vitamins and some other things with my sons too (both actually--I do almost everything that I do with Andrew with Caleb as well) but I don't want to overwhelm you with information. Optizinc cut down for his dosage level is a well absorbed zinc and zinc can be healing to the digestive and immune system.
I found a good occupational therapist who specializes in sensory issues. That has been good and helpful. Our early intervention therapies...well, they haven't been helpful in terms of the autism itself or minimally so. We're done in two weeks and I'm glad. It was helpful, though, when he was young and my son is verbal and I think our therapists are weak so your experience may be different.
On the sleep. I do use melatonin with my son but I use very low dose and I do not use it every night. Kids can build up a tolerance so you might take a break and then go back, using the smallest effective dose (my understanding is that small doses are less likely to build tolerance and also less likely to cause waking as it wears off) and taking breaks periodically. I know melatonin doesn't work for everyone but since it did with him originally I hope it will again. We have sleep issues here too and I really haven't found the answer. Naps are particularly a problem here though it is less so than it was at your son's age (just because as he gets older going without a nap doesn't mess up his night sleep as much as it did when he was young). I'm experimenting with some sleep stuff now. I'll let this board know if I find anything really useful.
Again, take time to just be. You don't have to make a ton of decisions now.

[nausicaamom]

I don't post much, but wanted to chime in that Greenspan's book about floor-time is a pretty good place to start. My husband got it for me from our local library. I read it after we got Michael's diagnosis (at 19months) on the recommendation of my own therapist and it did help me feel a bit more in control. As for the therapies and whatnot, I know for myself I have felt very overwhelmed with the need to do everything now, especially when you hear so much about windows of opportunity and the like and consequently the amount of work and money that comes with implementing it. Try to balance your need to do something *now* with your emotional need to digest things. I had been mentally preparing myself for the diagnosis for months while we were on the waiting list for the devlopmental ped and it still hit me like a ton of bricks.

The developmental ped who gave us the autism dx told me that I should be doing 20 hours of floor time with him a week and I was going crazy. It took a while for me to realize that I was already using most of those concepts everyday anyway, just not in discreet 30 minute intervals like Greenspan recommends. I attended a seminar on Autism last year given by a doctor from a facility in Maryland (can't remember the name right now). One of the things that she said really hit home with me about finding a balance between the window of opportunity and what the family can actually handle. It's very tricky finding that balance and while I haven't driven myself crazy trying to do it all, I have given myself a good bit of guilt for not trying to do it all, even though it's not emotionally possible for me.

Best of luck to you, your son, and your family. Even though I don't post here often, it is a constant source of comfort to come here after a bad day and read about another mom who's going through the same thing.

[Sleepymama]

My 4 y.o. DS has asperger's and is a really terrible sleeper. (I didn't choose my username for nothin!)

On top of the melatonin, which does work wonders for him (though we do have to have "cleansing" periods), is a weighted blanket like this:
http://www.weightedblanket.info/

I made ours--it wasn't too difficult if you can sew a bit.

We really struggle with sleep still and are considering meds for it, having exhausted pretty much everything else, so you have my sympathies!

[steph_momof3]

Wow...you all are awesome!

Sorry it has taken me so long to reply...have had tons going on.

SBGrace, thanks so much for the info! You have told me exactly what I wanted...a nice, concise list of where to start. THANK YOU! You have no idea how much I appreciate it.

Nausicaamom, 20 hours of floor time? How are you supposed to do that and have a normal life with the rest of your family? Thanks for the seconding of that book, I will definitely get it. I have heard stories about people doing their own therapies at home but with three kids I just don't know how I would do that.

Sleepymama, we have a weighted blanket. He always ends up sleeping on top of it. How do I get him to stay under it? And what meds are you considering? Can I ask how his sleep is horrible? What does he do?

Seriously, it helps SO much to hear other people are going through or have gone through what I am now dealing with. It sucks for you all too, but there is strength in numbers.

And for those of you who's kids are already in a twin bed or toddler bed, how do you know when they are ready to come out of their cribs? Some people have suggested he might sleep better in a regular bed, but I just know he would get out of it all the time and then we would just replace one issue with another one.



Steph

[Sleepymama]

Yeah, the weighted blanket only works half the time...and I have to get it on him after he's asleep. How big is yours? Maybe if it really covered the bed and he couldn't get around it?

DS sleeps with his dad in a queen size bed. He has serious anxiety about being alone in any circumstance, and though that is getting a little better with everyday stuff (he doesn't freak immediately if I leave the room all the time anymore, doesn't cling quite so much) he is terrified of sleeping. Just terrified. He has nightmares, night terrors (they are different), wakes up shaking and can't be calmed down, thrashes and kicks and moans all night long. And still, on most nights, wakes up like a newborn, every 2-3 hours and takes a long time to settle. He needs intense physical contact to stay asleep, which is making DH miserable (DS sleeps pressed right up against him with his head on DH's arm). I've tried to sleep with both kids but my baby doesn't sleep all that well either, and DS freaks out if I turn my back to him to nurse the baby.

The melatonin has helped tons with getting him to sleep in the first place--he only takes a half hour instead of 2 hours--but it doesn't seem to make any difference after that. We have tried feingold for a couple of months but it didn't seem to make any difference at night. He was a little bit better during the day but his eating habits are also atrocious and he was actually losing weight on it because he would not eat, period.

He also will not wear any clothes at all around the house, especially at night, and we have been through a 6 month process of getting OT evals and neuro consults to get our insurance to cover OT. He has another eval this week finally, and hopefully we can actually get some treatment approved this time.

He also has a medical history--congenital heart defect, 2 surgeries as a newborn--and his sleep has been like this since his second surgery (it was "normal" sick newborn before that). It has taken a while to get the asperger's diagnosis too because of the medical history--his weird eating/sensory delays and severe anxiety (especially separation anxiety) could easily be attributed to that. He was never delayed enough for EI, and I really regret not pushing for it but when he was a toddler his behavior didn't seem THAT out of the ordinary for a baby who had been through so much. At age 3 the school district used a classic autism scale on him which showed only the sensory stuff and some social issues because his language is off the charts. My brother has asperger's--he is the asperger's poster boy, fits all the criteria, but undiagnosed until he was in his 20's so I didn't recognize it right away either. It looks so different in DS. I digress.

We are seeing a psychiatrist tomorrow actually to talk about possibly antidepressants, mostly for the intense anxiety. I think if we can get a handle on that we can work through some of the reasons he doesn't sleep well--he hates blankets, so he gets cold, DH is kind of a noisy sleeper anyway, etc. He just doesn't have the capacity to reason about it because he's so anxious. Plus I'm really hoping the OT can work on the clothing issue. Really. He will never wear his arms in the sleeves of his shirt and rams his hands down the front of his pants at all times so they don't touch his penis, so he says (no underwear of course! please.) Ponchos rock. You don't have to put your arms in your sleeves to wear them. At least not if you don't want to touch anything, which he doesn't.

I'm kind of awed by the floortime too. I know I should be doing it, but I'm trying to fulfill the needs of my part time job (I'm a univ. professor), my baby (11 months, turning into a spirited toddler!) and getting him a sensory diet and not having either of them spend any more time in daycare/preschool than is absolutely necessary, which means I work from home a lot of the time. I don't know how you all do it.

I will say that I was not willing to try any meds until he was 4. I just felt medicating a 2 or 3 year old was too scary, too unproven. 4 is barely OK for me, but I don't think we can stand to live like this much longer...we will of course, but it takes a huge toll.

We had very similar issues with the gag reflex, which he also outgrew at 2.5-ish. Some of that is NICU/preemie related, some is just that their oral muscles don't develop enough. How is his eating? Have you read "Just Take a Bite"? It has really great info for getting them to be around (let alone try!) new foods. It has helped DS a bit but he really needs more consistency than I have energy for.

I believe there is a good book about autism and sleep but I can't remember the name offhand. There is a really good one about toilet learning and autism (don't expect that in a boy until he's 3.5 at least. DS trained last summer, almost overnight, when he was over 3.5). I'll see if I can find the title of the sleep book. Anyone know?

[cchrissyy]

I just wanted to tell you that sleep was just as bad as you describe when my boy was that age, but soon he was using his own bed at the start of the night and then quietly coming to ours. and by 4 he was going to bed independantly, falling asleep usually in 10 minutes. He still wakes but he doesn't come to us anymore.
it will work out!

[Sleepymama]

Thanks--my son is over four, but the OP's isn't! There is hope

[Imvishta]

Can someone tell me how the gag-reflex and autism are related? Thanks.

Actually, I've started a new thread on this topic: http://www.mothering.com/discussions...d.php?t=611264

[Annikate]

Just saw this thread.
Steph, have you made any dietary changes yet?

[steph_momof3]

I haven't made any dietary changes yet. He is going through a phase where all he will eat is either mac n cheese or chicken nuggets.

Not the healthiest, I know, but eating is such a battle for us. Not the actual eating part, but staying in a chair for any length of time is a nightmare. So I try to pick my battles.

Also, I just don't know what to do. I have seen info on the gfcf diet, some special carb diet, no dairy, etc.

I am not getting any info from our developmental ped on this because she just thinks getting the ABA therapy started is going to make a world of difference for him. And maybe it will, but his program isn't going to start for at least a month, so what am I to do in the meantime?

Wow...you all are awesome! I so appreciate all the info!

[Sleepymama]

Steph--definitely get this book

http://www.amazon.com/Just-Take-Bite...e=UTF8&s=books

it's for what they call "resistant" eaters who only eat one or two things (less than 10, usually). I am so with you, as DS's eating got even worse after about 2.5 or 3.

The book outlines a plan of attack where you get them used to even being near the foods they hate. Then you move through different sensory activities so they get used to the idea of tasting new things. We went through a period where DS would not even eat at the table because he couldn't be near our food. He still won't touch either one of us if we have food in our mouths or in our hands.

It should be first on your list for OT though--DS is definitely low on the weight charts and looks pale and unhealthy a lot of the time. Thankfully he'll eat chewable vitamins so he's getting something but he goes through major food jags where he only eats 2-3 things (usually some form of bread product) for weeks at a time. The book helped bring him back to the table though and talks a lot about the mechanics of eating--why they have such trouble.

To answer the other question about gag reflex/autism, it has a lot to do with the sensory integration disorder. The book says that feeding problems--gag reflex, trouble with textures, etc.--are a sign of oral motor delays, and these delays also cause speech delays. They're all related. So autism doesn't necessarily cause the overactive gag reflex, but individuals with autism often have oral motor delays that cause the feeding problems (also influenced by sensory integration--textures) and the speech problems. Kids without autism can have oral-motor delays too.

I wish I had read that book when DS was a baby--it really explains so much that I didn't realize.